Monday, October 5, 2009

Footprints and Shadows: The Tao of MS

Getting MS was never on anybody's agenda. None of us ever planned on getting sick, and the shock of the diagnosis is an uppercut to the jaw, a stunning blow that knocks some patients off balance forever.

During the never-ending process of learning how to spiritually and psychologically deal with my progressing disability I've found great solace in the Eastern philosophies of Zen Buddhism and Taoism. These philosophies emphasize that we each create our own reality through our perceptions and emotional responses to all that happens around and to us. Since our emotions are born of us, and not we of them (as popular culture would have us believe), we have the power to create our own happiness despite whatever circumstances life throws at us, by exercising control over those emotions. Nothing that happens to us is inherently "good" or "bad", it is our perceptions and reactions to the goings-on of existence that define them as such

This is not an easy concept to grasp, let alone put into practice, especially when you find yourself experiencing "creeping paralysis" (an actual early medical term for Multiple Sclerosis), but the only way to avoid utter despondency and hopelessness in the face of such a predicament is to mindfully and willfully refuse to define whatever obstacles life challenges you with as miserable. Happiness is a conscious choice that must come from within, and those who rely on outside sources as their fount of happiness are doomed to a life of perpetual discontent.

In fact, we live in a society that has evolved to deliberately breed dissatisfaction. Discontent fuels our economy; we're constantly bombarded by messages telling us that our problems can be solved through consumerism, that they stem from the fact that our teeth aren't white enough, our possessions – no matter how plentiful – are somehow lacking, and that popularity and sex appeal can only be attained by drinking the right beer or using the latest breakthrough in armpit deodorants. The true meaning of success is a BMW, sexual fulfillment awaits those who don the right pair of Levi's, and self-worth can be found in a really cool pair of Nikes. Happiness is equated with physical beauty, and the modern mythology of movies and television indoctrinates us with the belief that others can "complete" us and bring fulfillment that in reality can only come from within. This search for identity in romantic attachment has led to a divorce rate of over 50%, and instead of bringing everlasting happiness breeds a perpetual state of dissatisfaction we often feel for both our mates and ourselves.

It's incredibly easy to be seduced by these messages when you're healthy and striving to attain some preordained definition of success, even if you consider yourself enlightened and aware of the efforts being made to seduce you. Before I was forced to the sidelines by MS I made my money by playing a part in manufacturing these illusions, and still I was susceptible to them.

Once chronic illness hits, though, it's as if a veil of delusion is ripped away, and blindness abruptly gives way to vision. Suddenly, the absurdities of these notions of consumerist contentment come into crystal view. My physical condition won't allow me to drive a BMW, or any automobile, for that matter (and I was a guy who loved driving, zoom, zoom), fumbling with the button-down fly of the hippest pair of ridiculously expensive jeans would soon find me peeing in my pants, and unless those Nikes can somehow make my legs work again, they just aren't gonna do me any good. Still, such messages are beguiling, siren songs that no longer entice me to buy, but now serve to call attention to the many losses I've suffered.

Faced with these distractions, it's easy to lose oneself in the noise. When healthy, although I had an intellectual understanding of the basic tenets of Eastern thought, I found them nearly impossible to put into practice. Now that I'm sick, I find it just as impossible to not rely heavily upon them.

The literal translation of "the Tao" is "the Way", the inner path one must travel to find true happiness and contentment. This path can't be defined by outside influences, and is unique to each individual. In fact, the wisdom contained within cannot be conveyed to you by anybody else, and in that way the Tao, your Tao, is unknowable to all but you. Only by quieting our inner turmoil, and turning down the cacophony of conflicting thoughts, emotions and desires, can we come to an understanding of our own personal path to fulfillment. We carry within us all that we need to be happy despite the chaos ricocheting around us, and if we can only learn to listen to these inner whispers we can undertake the necessary steps to create our own contented reality.

We are taught very early on that taking action, almost any action, should always be the goal, and the heroes in our society are always those whose actions speak the loudest. But the deeper truth is that sometimes more can be accomplished by inaction rather than action, an idea that might seem incongruous, at first glance.

The flow of life can be likened to a raging river, and too many of us spend our lives constantly trying to swim upstream, valiantly but hopelessly fighting the natural flow of our own lives, sometimes to the point of drowning, in a desperate attempt to reach what we have been led to believe is material and personal "success". If time and effort is spent putting aside those frantic efforts, and we quiet down long enough to discern the true direction in which life wants to lead us, the wise come to understand that by simply floating on their backs and relinquishing the struggle, they will finally reach their destination, a truer more fulfilling destination, and thus avoid the misery, heartache and inevitable discontent born of the perpetual battle.

Many Taoist lessons are taught through parable, and my favorite of these was first related by the ancient Tao Master, Chuang-tzu:

“There was a man who disliked seeing his footprints and his shadow. He decided to escape from them, and began to run. But as he ran along, more footprints appeared, while his shadow easily kept up with him. Thinking he must be going too slowly, he ran faster and faster without stopping, until he finally collapsed from exhaustion and died.

What a fool.

If he had stood still, there would have been no footprints. If he had rested in the shade, his shadow would have disappeared.”

I've been aware of this parable for at least two decades, and was always struck by the simplicity and profundity of its wisdom. Now, afflicted with MS, its message has taken on immense new dimensions. My footprints are now tire tracks, and when I see my shadow I'm somehow still always shocked to see that the silhouette I make is no longer that of the strapping 6 footer I once was, but instead is that of a man in a wheelchair. MS has erased my footprints, and forced me to sit at rest. This reality is inescapable no matter how frantic my efforts, and running away is quite literally no longer an option.

The way, then, is to find the contentment within that eclipses physical disability, and to make the infinite number of choices each and every day that allow for that contentment. I will never be happy about having multiple sclerosis, but I can be happy in spite of it. My efforts to combat the disease will never cease, but in the tradition of the ancient warrior, my efforts to battle the illness are best born from tranquility and quiet determination, and not from the turmoil of desperation.

In the end, when pondering the imponderable, we simply must learn to let it be.

Marc,This post made me feel relieved in some strange way. And then I thought of the word 'relieved' and it sounds like 'RE LIVED'. Perhaps we are getting a chance at exactly that.. A 'do-over' if you will. There is a welcome openness to this way of thinking rather than the clutching at what was or could've been. Thanks.

"Nothing that happens to us is inherently "good" or "bad", it is our perceptions and reactions to the goings-on of existence that define them as such"

A wonderful post Marc, but IMHO, these are the only words needed. I am always brought back to this in my own practice. Plus the conscious effort to be in the Now. Not the past or 5 minutes ago, not the future or the next 5 minutes either.

All easier said than done, but this is why it's called a practice isn't it?

A few lifetimes ago, I was living out of my car and solo backpacking the mountains of the Southwest. My reading materials were the Dhammapada, The Tao te Ching, Bhagavad Gita, and the like. These were intriguing and heady concepts as I removed the view lens of my upbringing.

They now present in a completely different way to me. Not as exotic. More challenging if actually implemented yet practical. And, they come and go. Like weeble said, practice.

Manju-thank you. Coming from a person who I know to be wise, your praise is quite humbling indeed.

Centennial-thinking you can do it is half the battle. After all, thought is reality, and reality is thought.

Cathy-as usual, you bring a unique perspective to the conversation. Thank you for contributing.

Weeble-it is indeed a practice, and in this case it's unlikely that practice will make perfect. But as in most things of real value in life, the journey is far more important than the destination.

Jon-thank you very much, my friend.

Ugich-the "shadows and footprints" parable certainly made a lasting impression on my life. I've been reminded of the power and wisdom of those words time and time again through the years.

Rob-if you're interested in learning about the Tao, a good place to start is a book called "The Tao of Pooh". Seriously. The book explains many of the concepts of Taoism through the use of the familiar "Pooh" characters, and is a great introduction to the philosophy.

Zoom-I'm glad you found this of value. Thanks for your comment.

Anonymous-wow, this post really seems to have resonated with people. There's something about many of the Eastern philosophies that people seem to sense inherently, and recognizing those feelings in words can really give a person pause. Thanks for your words of praise...

Biblio-sounds like you undertook a real journey of discovery. I have found it incredibly challenging to take these ideas from concepts to life choices, and like you say, success with this comes and goes. But the effort itself is therapeutic...

Another beautiful post. I will be reading "The Tao of Pooh". I've had trouble concentrating enough to read much of anything longer than the ingredient list on my cereal box, but I believe I can concentrate on this.

Beautifully written. I too believe that happiness,truth and inner peace come from within. Keep writing! I find your posts very interesting, well researched, and you have a fantastic sense of humor. I especially appreciate your messages concerning CCSVI. There is so much misinformation about it and I welcomed your caution concerning having the "Liberation treatment." I have not been scanned, but would like to in a study setting.

Glad I stumbled on this post and blog. I was diagnosed 14 years ago and apparently have had MS for 20 plus years. I am just starting to come up against limited mobilty and never thought I'd find such joy in buying a scooter. The thing that helps me through it all it a commitment to self expression. i applaud you for putting yourself out there and providing a voice to the those of us afflicted with the disease. I am just working my way through your posts. You write well and i love reading this stuff. I live in Western jersey and would welcome a chance to break bread with you in NYC if you are up for it.

What an incredible blog. Thank you so much for sharing your experience. I was diagnosed with PPMS in 2005, and became wheelchair-dependent in 2007. I have subscribed to your blog and look forward to reading more about your journey....Continue to take good care of yourself.

My husband has RRMS, and he recently stumbled upon your blog. You are insightful, true, understanding, thought-provoking. Really wonderful writing. I find MS to be quite cruel in the way it attempts to steal away one's future, but my family has resolved to embrace life and happiness in spite of MS. Tomorrow is never a guarantee, not for anyone. The truth of life is that filling up our homes and minds and hearts with "things" will never satisfy the need to fill ourselves from within. We can choose to cram each space full of as many meaningless possessions as will fit, or we can clear the clutter and allow room for our true selves to grow and flourish - for it is in the space of personal evolution that one truly encounters contentment and peace.

Marc - After reading this today, I thought it would be nice to tell you how much it has impacted me. I have this post bookmarked and have been reading it often (at least a few times a month) for close to a year. I can't express to you how much your words continue to help me, so I won't try. Just know that this post has played a major part in me accepting my MS diagnosis and getting closer to being OK with it and finding my happiness. I always enjoy your posts, but this one has helped me tremendously.

Anyway, just wanted to say thanks, I hate that you have MS, but the MS community is lucky to have you!

Thanks, Jeff. This has been one of my favorite posts for a long time, too. So glad to hear that it's been of help to you. Being able to help others who are forced to travel a similar rocky road has at least give& some method to the madness of my disease. Keep on keeping on, as they say…

I love your philosophy!! So beautiful! So empowering!! So true!! Thank you for sharing your wisdom!!I have been on this MS journey for the last 10 years and I found it has been my greatest teacher!!LoveMounina

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...